END OF LIFE CARE RESOURCES  
   

END OF LIFE CARE

  
American College of Physicians                                                             http://www.acponline.org/index.html
The EPEC Project, Education for Physicians on End-of-Life Care http://www.epec.net/
Cancer Net, The National Cancer Institute http://www.meb.uni-bonn.de/Cancernet/cancernet.html
End of Life Physician Education Resource Center http://www.eperc.mcw.edu/
Growth House, Inc, End-of-Life Care http://www.growthhouse.org/
HealthAtoZ, palliative care http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/hc/sen/eolf/pallcr.jsp
National Hospice and Palliative Care Organization http://www.nhpco.org/
HELP, Helpful Essential Links to Palliative Care http://www.dundee.ac.uk/meded/help/seca
End-of-Life Care: Artificial Hydration and Nutrition (AAFP) http://www.familydoctor.org/handouts/629.html
End-of-Life Care: Cardiopulmonary Resuscitation (AAFP) http://familydoctor.org/handouts/630.html
   

DEATH & DYING/BEREAVEMENT/GRIEF & LOSS

  
Caregivers Information http://www.nlm.nih.gov/medlineplus/caregivers.html
NCI, Cancernet, Loss, Grief, Bereavement PDQ http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient
Last Acts http://www.lastacts.org
Nevada Center On Ethics & Health Policy http://www.healthethics.org
Dying Persons Guide To Dying http://www.acponline.org/public/h care/dying-gd.htm
Facts About End-of-Life Care (Partnership for Caring) http://www.acponline.org/public/h_care/dying-gd.htm
What To Do Before and After The Moment of Death (ACP) http://www.acponline.org/public/h_care/8-moment.htm
Coping With Loss – Bereavement and Grief (NMHA) http://www.nmha.org/infoctr/factsheets/42.cfm
Grief and Loss (American Caregiver Alliance) http://www.caregiver.org/factsheets/grief.html
Grieving (ACP and ASIM) http://www.acponline.org/public/h_care/10-griev.htm
Grieving: Facing Illness and Death and Other Losses (AAFP) http://familydoctor.org/handouts/079.html
Clinical Trials on Death http://clinicaltrials.gov/ct/gui/action/FindCondition?ui=D003643&recruiting=true
Funerals and Memorials: A Part of Recovery http://www.psych.org/disaster/funerals_memrecov101601.cfm
Stillbearth, Miscarriage, and infant death http://www.compassionatefriends.org/stillbirth.htm
Redefining End-of-Life Care for People With Dementia (Last Acts) http://www.lastacts.org/scripts/la_eln01.exe?FNC=SeeFeature__Ala_eln_features_html___4281

ACP Home Care Guide for Advanced Cancer: Problems with

Communication, Mental Confusion, and Seizures

 http://www.acponline.org/public/h_care/5-probl.htm
ACP Home Care Guide for Advanced Cancer: Shortness of Breath http://www.acponline.org/public/h_care/4-short.htm

Advance Directives Found Key to Reducing Stress for Families

of Hospitalized Patients at the End of Life

 http://www.nih.gov/news/pr/mar2001/ninr-15.htm
Advanced Cancer: Living Each Day (National Cancer Institute) http://cancernet.nci.nih.gov/peb/advancedcancer/
Autopsy: Post Mortem Examination (MedicineNet, Inc.) http://www.medicinenet.com/Script/Main/Art.asp?li=MNI&d=251&f=12217&ArticleKey=12217
How To Help During the Final Weeks of Life (ACP) http://www.acponline.org/public/h_care/7-final.htm
Mortality Declines for Several Leading Causes of Death in 1999 http://www.hhs.gov/news/press/2001pres/20010626.html
Talking About Your Choices (Partnership for Caring) http://216.36.240.148/Advance/talking_choices_content.html
Viatical Settlements (Federal Trade Commission) http://www.ftc.gov/bcp/conline/pubs/services/viatical.htm
Addressing AIDS-Related Grief and Multiple Losses (AMA) http://www.ama-assn.org/special/hiv/treatmnt/hopkins/grief.htm
After Sudden Infant Death Syndrome: Facing Anniversaries, Holidays, and Special Events http://www.sidscenter.org/FACING.HTM
Death of an Adult Child (Compassionate Friends) http://www.sidscenter.org/sids.pdf
Grief and Emotional Response Advice (DHHS) http://www.hhs.gov/news/press/2001pres/20010915.html
Grief of Stepparents When a Child Dies (Compassionate Friends) http://www.compassionatefriends.org/steppar.htm
How Can I Help When A Child Dies? (Compassionate Friends) http://www.compassionatefriends.org/helpyou.htm

Loving Again After the Loss of a Partner (Mayo Foundation)

 http://www.mayoclinic.com/invoke.cfm?id=HQ01024

Parents Who Are Now Childless (Compassionate Friends)

 http://www.compassionatefriends.org/childless.htm
Pet Loss and Grief (Mayo Foundation) http://www.mayoclinic.com/invoke.cfm?id=HQ01205

Surviving Your Child's Suicide (Compassionate Friends)

 http://www.compassionatefriends.org/suicide.htm

When a Co-Worker is Grieving the Death of a Child

 http://www.compassionatefriends.org/coworker.htm
When an Employee is Grieving the Death of a Child http://www.compassionatefriends.org/employee.htm
When a Brother or Sister Dies (Compassionate Friends) http://www.compassionatefriends.org/siblings.htm
Compassionate Friends http://www.compassionatefriends.org/
   

PALLIATIVE CARE/PAIN MANAGEMENT

  
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   

 

 

 

PALLIATIVE CARE/PAIN MANAGEMENT

Pain Untreated in Some Mentally Impaired Children                                 http://www.nlm.nih.gov/medlineplus/news/fullstory_5538.html

Many Elderly Do Not Receive Pain Medication                                        http://www.nlm.nih.gov/medlineplus/news/fullstory_5320.html

University of Ottawa Institute of Palliative Care                                      http://www.pallcare.org/

MD Anderson Cancer Center, Palliative Care/Rehab Medicine               http://www.mdanderson.org/Departments/palliative

National Institute of Neurological Disorders & Stroke/Chronic Pain         http://www.ninds.nih.gov/health_and_medical/disorders/chronic_pain.htm

Pain, Hope Through Research  (NINDS)                                                 http://www.ninds.nih.gov/health_and_medical/pubs/pain.htm

Chronic Pain:  Taking Control (Mayo Foundation)                                   http://www.mayoclinic.com/invoke.cfm?id=HQ00431

Management of Pain (American Society of Anesthesiologists)              http://www.asahq.org/PublicEducation/pain_manage.html

Pain  (National Women’s Health Information Center)                               http://www.4woman.gov/faq/pain.htm

Clinical Trials on Pain                                                                               http://clinicaltrials.gov/ct/gui/action/FindCondition?ui=D010146&recruiting=true

Chronic Pain: Exercise Can Bring Relief (Mayo Foundation)                  http://www.mayoclinic.com/invoke.cfm?id=AR00017

Managing Daily Life When Dealing With Chronic Pain (AOTA)               http://www.aota.org/featured/area6/links/link02i.asp

Managing Pain: Attitude, Medication & Therapy are Keys to Control      http://www.mayoclinic.com/invoke.cfm?id=HQ01055

Pain Management for Neck and Back Pain                                              http://www.spine-health.com/topics/conserv/pain/painm/painm01.html

Natural Compound May Offer New Treatment for Chronic Pain             http://165.112.78.61/NIDA_Notes/NNVol16N3/Natural.html

New Target Identified for Chronic Pain Therapy                                     http://www.ninds.nih.gov/news_and_events/pressrelease_pain_111899.htm

Popular Pain Analgesics Found to Affect Central Nervous System       http://www.nih.gov/news/pr/mar2001/ninds-21.htm

Cancer Pain (American College of Physicians)                                      http://www.acponline.org/public/h_care/3-pain.htm

Central Pain Syndrome (NINDS)                                                              http://www.ninds.nih.gov/health_and_medical/disorders/centpain_doc.htm

Financial Issues (American Pain Foundation)                                         http://www.painfoundation.org/page_document.asp?DocFile=doc_017.htm

Neuropathic Pain (McGraw-Hill Companies)                                           http://www.postgradmed.com/issues/1999/11_99/pn_neuropathy.htm

Polyneuropathy: Diabetic Neuropathy, AIDS Neuropathy,                      http://stoppain.org/pain_medicine/polyneuropathy.html

                and Others (Beth Israel Medical Center)                                                

Chronic Pain Medicines (AAFP)                                                              http://familydoctor.org/handouts/122.html

Frequently Asked Questions About Pain Treatment (Beth Israel)          http://stoppain.org/pain_medicine/faq.html

General Treatments (Beth Israel)                                                            http://stoppain.org/pain_medicine/general_treatments.html

Find a Doctor (American Pain Foundation)                                             http://www.painfoundation.org/page_document.asp?DocFile=doc_020.htm

Find a Pain Treatment Center (American Pain Society)                          http://www.ampainsoc.org/facility/

New JCAHO Pain Standards Are Approved (American Pain Society)   http://www.ampainsoc.org/about/annual/1999/annual16.htm

 

LAW AND POLICY

Advance Directives (American Health Care Association)                      http://www.ahca.org/info/advdir.htm

Advance Directives (American Geriatrics Society)                                http://www.americangeriatrics.org/education/forum/advance.shtml

Advance Directives and Do-Not-Resuscitate Orders (Aafp)                 http://familydoctor.org/handouts/003.html

End-of-Life Decision-Making (Family Caregiver Alliance)                       http://www.caregiver.org/factsheets/end_of_life.html

Ethics and Legal Issues in Palliative Care (Beth Israel Medical Center) http://www.stoppain.org/palliative_care/ethics.html

Women and End-of-Life Decisions (Partnership for Caring)                  http://www.partnershipforcaring.org/Resources/women&eol02.html

 

HOSPICE

NCI Cancer Facts, Hospice                                                                     http://cancernet.nci.nih.gov/cgi-bin/srchcgi.exe?DBID=pdq&TYPE=search&SFMT=pdq_statement/1/0/0&Z208=208_06750P

Communicating Your End-of-Life Wishes (NHPCO)                                http://www.hospiceinfo.org/public/articles/index.cfm?cat=6

Helping You Choose Quality Home Care and Hospice (JCAHO)            http://www.jcaho.org/choices/h_homeca.html

Hospice Care in the Nursing Home (AAFP)                                            http://familydoctor.org/handouts/250.html

How to Select a Hospice Program (NHPCO)                                           http://www.hospiceinfo.org/public/articles/index.cfm?cat=3

Hospice Care: When Comfort, Not Care, is the Focus of Treatment      http://www.mayoclinic.com/invoke.cfm?id=HQ00860

Hospice Cares Online Community                                                           http://www.hospice-cares.com/oc_home.html

Hospice Foundation                of America                                             http://www.hospicefoundation.org/

Hospice Net                                                                                             http://www.hospicenet.org/index.html

Find a Hospice Program (NHPCO)                                                           http://www.nhpco.org/Directory/

Ethics and Legal Issues in Palliative Care (Beth Israel Medical Ctr)        http://www.stoppain.org/palliative_care/ethics.html

Medicare Hospice Benefit (NHPCO)                                                        http://www.hospiceinfo.org/public/articles/index.cfm?cat=7

Medicare Hospice Benefits (Centers for Medicare/Medicaid Svcs)       http://www.medicare.gov/Publications/Pubs/pdf/finlhosp.pdf

 

ORGANIZATIONS/SUPPORT GROUPS

National Institute of Mental Health                                                           http://www.nimh.nih.gov/

Partnership for Caring                                                                             http://www.partnershipforcaring.org/HomePage/

How Can Spirituality Affect Your Family's Health?                                 http://kidshealth.org/parent/positive/family/spirituality.html

Healing Hearts Bereaved Parents                                                           http://www.healingheart.net/

Bereaved Parents of the USA                                                                http://www.bereavedparentsusa.org/

National Hospice and Palliative Care Organization                                  http://www.nhpco.org/

How Can Spirituality Affect Your Family's Health?                                 http://kidshealth.org/parent/positive/family/spirituality.html

American Chronic Pain Association                                                        http://www.theacpa.org/

American Pain Foundation                                                                      http://www.painfoundation.org/

National Institute of Neurological Disorders and Stroke                          http://www.ninds.nih.gov/

 

STATISTICS

Leading Causes of Death (National Center for Health Statistics)           http://www.cdc.gov/nchs/fastats/lcod.htm

Facts and Figures on Hospice Care in America (NHPCO)                      http://www.nhpco.org/public/articles/factsheet0101.pdf

 

CHILDREN

Death and Dying (Ambulatory Pediatric Association)                             http://www.ambpeds.org/deathanddying.cfm

Helping Younger People Cope with Death and Funerals (ACP)             http://www.acponline.org/public/h_care/9-young.htm

Talking to Children About Death (NIH, Clinical Center)                            http://www.cc.nih.gov/ccc/patient_education/pepubs/childeath.pdf

When Somebody Dies (Nemours Foundation)                                        http://kidshealth.org/kid/feeling/emotion/somedie.html

Helping Younger People Cope with Death and Funerals (ACP)             http://www.acponline.org/public/h_care/9-young.htm

How to Help Your Child Deal With Death (Nemours Foundation)            http://kidshealth.org/parent/emotions/feelings/death.html

Someone in My Friend's Family Died - What Should I Do?                      http://kidshealth.org/kid/feeling/friend/family_friend_died.html

When Somebody Dies (Nemours Foundation)                                        http://kidshealth.org/kid/feeling/emotion/somedie.html

Acetaminophen in Children: Is It Safe? (Mayo Foundation)                    http://www.mayoclinic.com/invoke.cfm?id=HO00002

Children and Pain (National Institutes of Health)                                     http://www1.od.nih.gov/painresearch/genderandpain/children.htm

Patient-controlled Analgesia (Nemours Foundation)                               http://kidshealth.org/parent/system/medicine/pca_pain.html

Truth About Pain (Nemours Foundation)                                                 http://kidshealth.org/parent/general/aches/pain.html

 

SENIORS

End of Life Care: A Guide for Seniors and Caregivers                          http://www.americangeriatrics.org/education/forum/endoflife.shtml

Understanding Grief: When a Grandchild Dies                                       http://www.compassionatefriends.org/grandch.htm

Grandparents as Caregivers (Administration on Aging)                        http://www.aoa.dhhs.gov/may97/grandparents.html

Grandparent's Guide for Family Nuturing & Safety                                 http://www.pueblo.gsa.gov/cic_text/children/grandparents/grand.htm

 

TEENAGERS

When a Brother or Sister Dies (Compassionate Friends)                       http://www.compassionatefriends.org/siblings.htm

 

ESPANOL/SPANISH

Directivas Avanzadas y Órdenes de No Resucitar (AAFP)                   http://familydoctor.org/spanish/e003.html

Aflicción, Tristeza o Dolor por una Pérdida: Mostrando la Cara             http://familydoctor.org/spanish/e079.html

a la Enfermedad, la Muerte y Otras Pérdidas (AAFP)

Niños y la Pena por la Muerte de un ser Querido (AACAP)                   http://www.aacap.org/publications/apntsfam/grief.htm

PDQ-Sobre Cuidado Médico-Pacientes: Pérdida, Pena y Pesar (NCI)    http://www.cancernet.nci.nih.gov/clinpdq/supportive_pt_span2/506750.html

Cuidados Paliativos (National Cancer Institute)                                       http://cis.nci.nih.gov/fact/8_6s.htm

 

 

BOOKS

 

                Death and Dying

 

Tuesdays With Morrie at Top  By Victoria Weisfeld ,

A Lesson Before Dying by Gaines, a previous Oprah Book Club selection

The Tibetan Book of Living and Dying by Rinpoche

Final Gifts Callanan, LP

Graceful Exits: How Great Beings Die by Blackman

How We Die by Nuland

Ceremony by Silko

A Year to Live – by Levine

The Measure of Our Days by Groopman

She Came to Live Out Loud by MacPherson

The Undertaking: Notes from the Dismal Trade by Thomas Lynch

The Good Death by Marilyn Webb

Transforming Death in America: A State of the Nation Report by Margaret Metzger, JD, Karen Orloff Kaplan, MPH, ScD, Published : 08/28/2001

Compendium of Health Care Organization Guidelines and Position Statements by Donald F. Phillips, Charles Sabatino, JD, Karen Nisley Long; Published 08/22/2001

Medicaid and End-of-Life Care by Jane Tilly and Joshua Wiener ,   Published : 06/15/2001

 

                End-of-Life Care

 

Innovations in End-of-Life Care: Practical Strategies and International Perspectives,Volumes 1& 2 Edited by Mildred Z. Solomon, Anna L. Romer, and Karen 09/01/2000

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers by Maria Meyer and Paula Derr, RN.  Last Acts Consumer/Family resources for Caregivers by Last Acts Family Committee, Published : 05/15/2001

Ask Tough Questions/National Resources by Last Acts ,   Published : 03/21/2001

How End-of-Life Care Can Be a Positive Issue for Policy Leaders by Jeri Spann and Myra Christopher ,   Published : 01/31/2001

Preparing Future Nurses and Doctors to Care for the Dying by Jeri Spann and Myra Christopher, Published : 01/31/2001

Ten Ways to Grow the Last Acts Campaign by Julia Zauner ,   Published : 06/27/2000

Last Acts Can Help You Promote Your Organization by Julia Zauner ,   Published : 06/27/2000

Developing Quality Indicators for End-of-Life Care in Nursing Homes by Jeri Spann and Myra Christopher , The Robert Wood Johnson Foundation  Published : 04/21/2000

Working Together: We Can Help People Get Good Care When They Are Dying by The Institute of Medicine ,   Published : 04/10/2000

 

BOOKS

                End-of-Life Care (cont’d)

 

Facts and Controversies about Nursing Home Reimbursement by Myra Christopher and Jeri Spann ,   Published : 03/20/2000

Promising Educational Initiatives for Staff, Regulators, and Families by Jeri Spann & Myra Christopher ,   Published : 01/02/2000

How Regional Long-Term Care Ethics Committees Improve End-of-Life Care by Jeri Spann & Myra Christopher, Published : 01/01/2000

A Vision for Better Care at the End of Life by Colleen Scanlon & Karen Lomax, Task Force Convenors ,   Published : 03/17/1999

Oregon Health Decisions: Lighting the Way to Common Ground by Jeri Spann and Myra Christopher ,   Published : 01/15/1999

The Challenge of End-of-Life Care: Moving Toward Metanoia? by Stan Karson and John Rother, co-convenors, with Karin Gillespie, Published : 10/30/1998

                                                               

 

                Palliative Care/Pain Management

 

Oxford Textbook of Palliative Medicine 2nd Edition by Derek Doyle, Published : 1999

Cancer: Palliative Care by Robert Dunlop, Published : 1998

Handbook of Palliative Care by Christina Faull, Published : 1998

Palliative Medicine: A Case-Based Manual by Neil MacDonald, Published : 1998

Palliative Care Ethics: A Good Companion, 2nd Edition by Fiona Randall and R.S. Downie, Published : 1999

Annotated Bibliography - Pharmacy Journals Author : Pain & Policy Studies Group, Published 11/01/2001

Expanding Prescription Drug Coverage in Medicare: Issues for End-of-Life Care by Tom Ault and Michael Hash ,   Published : 09/01/2001

Implementing End-of-Life Treatment Preferences Across Clinical Settings by Jeri Spann & Myra Christopher ,   Published : 05/01/1999

A Report on Pain Policy by  Myra Christopher & Jeri Spann ,   Published : 05/01/1999

Advances in State Pain Policy and Medical Practice by Jeri Spann & Myra Christopher, Published : 04/01/1999

Pain Undertreatment: "A Strikingly Large Problem".

 

 

                Hospice

 

An Exploration Of Hospice Referral: Barriers & Enablers by Harris Interactive,  Published : 12/01/1999

 

 

(Revised -08/23/07